Alzheimer's Disease
Easing the Pain

What Caregivers Can Do

"I HAVE always been amazed at how different [people] are in their ability to cope," says Margaret, a medical professional from Australia who has dealt with Alzheimer's patients and their carers for many years. "Some families are able to manage with the most incredible demands placed on them," she continues, "while others are rendered almost incapable of dealing with the situation as soon as the person exhibits the slightest change in their personality."—Quoted in the book When I Grow Too Old to Dream.

What is it that makes the difference? One factor can be the quality of the relationship that existed before the onset of the disease. Families with a close, loving relationship may find it easier to cope. And when a person with Alzheimer's disease (AD) is well cared for, the disease may be easier to manage.

In spite of declining intellectual abilities, sufferers usually respond to love and tenderness right up to the final stages of the disease. "Words," points out the advice sheet Communication, produced by the Alzheimer's Disease Society of London, "are not the only means of communicating." Nonverbal communication essential to caregivers includes a warm, friendly facial expression and a mild tone of voice. Also important is eye contact as well as clear, steady speech and frequent use of the patient's name.

"Not only is maintaining communication with your loved one possible," says Kathy, mentioned in the preceding article, "but it is also important. Warm and affectionate physical contact, a mild tone of voice and, actually, your physical presence all provide security and reassurance for your loved one." The Alzheimer's Disease Society of London sums up by saying: "Affection can help you to keep close, particularly when conversation becomes more difficult. Holding the person's hand, sitting with an arm round them, talking in a soothing voice or giving them a hug are all ways of showing that you still care."

Where a warm relationship exists, caregiver and patient can often have a good laugh together even when mistakes are made. For example, one husband recalls how his mentally confused wife made the bed but mistakenly put the blanket between the sheets. They discovered the mistake when they went to bed that night. "Oh dear!" she said, "I've been silly." And they both had a good laugh.

Keep Life Simple

AD sufferers function best in familiar surroundings. They also need a regular daily routine. To this end, a large calendar with daily appointments clearly marked on it is very helpful. "Moving someone from their usual environment," explains Dr. Gerry Bennett, "can have dreadful consequences. Sameness and continuity are very important for the confused person."

Help the patient keep oriented and in touch

As the disease develops, AD sufferers find it more difficult to respond to instructions. Directions have to be given in a simple, clear way. For example, telling a patient to get dressed may be too complex. The items of clothing may have to be put out in order and the patient helped one step at a time with each item of clothing.

The Need to Keep Active

Some AD sufferers pace about or wander away from their home and get lost. Pacing is a good form of exercise for the patient and may help to reduce tension and improve sleep. However, wandering away from home can be dangerous. The book Alzheimer's—Caring for Your Loved One, Caring for Yourself explains: "If your loved one wanders away, you are faced with an emergency situation that could easily turn to tragedy. The phrase to remember is don't panic. . . . Search parties need a description of the person they're looking for. Have some recent colour photographs at home."*

On the other hand, some sufferers become lethargic and may just want to sit down all day. Try to get them to do something that you can both enjoy. Get them to sing, whistle, or play a musical instrument. Some enjoy clapping, moving, or dancing to favorite music. Dr. Carmel Sheridan explains: "The most successful activity for people with A.D. is usually one which incorporates music. Families often comment that long after the meaning of other [things] have been forgotten, their relative still enjoys old familiar songs and melodies."

"I Wanted to Do It"

A South African wife whose husband was in the final stages of AD enjoyed spending every day with him in the nursing home. However, well-meaning family members criticized her for doing this. Perhaps it seemed to them that she was wasting her time, since her husband didn't seem to recognize her and never said a word. "Nevertheless," she explained after his death, "I wanted to sit with him. The nurses were very busy, so when he dirtied himself, I could wash and change him. I enjoyed it—I wanted to do it. Once, he hurt his foot while I was pushing him in a wheelchair. I said, 'Does it hurt?' and he answered, 'Of course!' Then I realized that he could still feel and talk."

Even in cases where a good family relationship did not exist before the onset of AD, caregivers have still been able to cope.# Just knowing that they are doing what is right and what is pleasing to God can give them a deep feeling of satisfaction. The Bible says, 'Show consideration for an old man' and, "Do not despise your mother just because she has grown old." (Leviticus 19:32; Proverbs 23:22) Furthermore, Christians are commanded: "If any widow has children or grandchildren, let these learn first to practice godly devotion in their own household and to keep paying a due compensation to their parents and grandparents, for this is acceptable in God's sight. Certainly if anyone does not provide for those who are his own, and especially for those who are members of his household, he has disowned the faith and is worse than a person without faith."—1 Timothy 5:4, 8.

With God's help, many caregivers have been able to do a commendable job in caring for sick relatives, including those who suffer from Alzheimer's disease.

*  Some caregivers have thus found it helpful to provide the patient with some identification, perhaps in the form of a bracelet or necklace that can be worn.

#  For additional information on caregiving and how others can help, please see the series "Caregiving—Meeting the Challenge," on pages 3-13 of the February 8, 1997, Awake!